To not want to live like this?

[EndoFun]

I have endometriosis. Every month, for 2-3 weeks of the month, I am severely disabled with lower back pain both prior to and after my period.

I take NSAIDS every few hours for 2-3 weeks of the month to allow me to try to look after my two young children. It’s the only thing that helps, but I’m now getting severe reflux and stomach pain due to the amount of meds I take. However, that’s nothing compared to the pain.

I have to take scalding baths twice per day to ease the pain. I can’t sleep properly or turn over in bed. After periods of rest my lower back gets extremely stiff (presumably the muscles protecting the irritated area) that I waddle around. My toddler finds it hilarious but it is crippling.

Surely enough, out of nowhere, the pain has started today so I checked my calendar and I’m due a period in 6 days. I have a huge work event coming up and now I’m going to be rendered completely useless for it. I’ve had enough.

Does anyone else get this and have any advice?

@EndoFun hey , sorry I have no advice as I don’t have this condition but omg I feel sooo sooo sorry for you ! This feels like hell , most of the month you’re in pain and you don’t seem to have much time to be pain free before it starts again . And taking tablets everyday is so so bad for your health but I get it that you need to do this . What have GP said about all of this ? Is there anything that can be done permanently ? Or is there no cure and you have to suffer for the rest of your life ? I have heard from somewhere that people with endo can have the womb removed if they can’t manage the pain anymore ? I know it’s such a shit choice as that would be infertility , Sorry if I’m a bit clueless xx

Sorry OP. 💐 Would it help to get support here: https://www.endometriosis-uk.org/get-support

I had endo and fibroids. Eventually I had a total hysterectomy - no more periods. Bliss!

No guarantee it will work but I do know of some women who have had relief from following the Human Being Diet from Petronella Ravenshear.
What does your endo consultant recommended? Have they offered an operation to remove the adhesions?

Firstly - alternate nsaids and paracetamol

Or you can get a paracetamol-codeine mix from the pharmacy called co-codamol which is stronger.

Speaking as someone with endo I'd strongly recommend you cut down or eliminate your periods.

If you go on the pill you can run packets together and halve the number of periods. If you get the injection or implant then for me they stopped altogether (not always the case)

What painkillers are you taking? Can you alternate with paracetamol or take something stronger than regular ibuprofen?

I don’t know what I have but I have these same symptoms. I had a bath this morning to relieve my joint pain and then almost fainted. I use a hot water bottle and go to bed

I also have endo, you need to go back to your GP or back to your gynaecologist and get put on a treatment program.

As @Octavia64 says, you can run pill packets back to back or get the injection. This is seriously no way to live. You need either meds or surgery. If you leave this untreated this is just going to get worse.

@ByBrightSloth again, no way to live, go to your GP and get referred to a gynaecologist.

My consultant dismissed me and said to speak to my GP to go on the pill. I haven’t been to the GP for the pill because having used it before, I endured awful side effects.

Does endometriosis also cause hormonal mood swings? I go from being ok to wanting to drive my car over a cliff to being ok again. It’s unpredictable and obviously unpleasant.

@EndoFun Have a read up on this website, good information to arm yourself with. Sadly we have to fight to get what we want.

https://www.endometriosis-uk.org/

There are at least two different kinds of pill.

There is the combined pill and the progesterone only pill.

Depending on which one you tried it may be worth trying the other.

I also had side effects on the pill and now have the implant.

Bless you. My mum suffered from endo and I fear I might be going the same way.

She ended up having a hysterectomy in her mid-forties.

It's a horrible condition.

Are you keeping a symptoms diary? Including how it affects your life? Is your GP sympathetic?

My 23 year old daughter has been on the waiting list for a laparoscopy for 3 years to see if she’s got endometriosis she can barely walk at times, but because of her age they’re in no rush to get her seen!

I'm sorry, I don't know much about endo except that surgery can sometimes help, but I saw you mentioned having side effects on the pill, and I just want to mention the possibility of progesterone intolerance - I became very depressed on the progesterone-only mini pill, and then some years later had the Mirena put in and within three months I was a suicidal basketcase. The Mirena has only a progestin, levonorgestrel.

However, on the combined oral contraceptive Diane 35, I was fine. Maybe because it also contains the opposing hormone oestrogen, or maybe because the particular type of progestin in that pill (I can't remember which type) was okay for me.

OP - I really sympathise with you.It is horrendous and really impacts your quality of life. i had severe endometriosis in my twenties and it took forever to get a diagnosis. My symptoms were just like yours and it got to the stage where I was only having about 2 good days a month. The GP back in 2005 didn't take me seriously and tried to tell me my symptoms showed I was constipated and that I needed laxitives, I was firm and eventually he referred me for an Ultrasound after a lot of eyerolling. I got the impression my GP had put something on my notes similar to ' Pacify her so she thinks we are doing something'. I was given an external ultrasound and told everything was fine.

A year later I was in agony and ended up paying for a private scan - it was done properly, including internally and it showed that I had extensive endometrisis. My parents helped me out with the cost of the laparoscopy( bless them) and I got it done privately as I just wasn't managing to function with day to day life. I had a laporoscopy which showed endometriosis all over my ovaries,pouch of douglas? fallopian tubes as well as an ovarian cyst and fibroids. They were all sorted out in the op and nearly twenty years on I have never suffered with endo again - just normal period pains. I also have two children conceived naturally and I kid you not, I was in a terrible state.

Put your foot down with the Consultant and say that you are not satisfied with his response about going on the pill. Have you even had any sort of scan to see how extensive it is? If you can afford it, I'd recommend paying for a private scan and then taking the findings back to the NHS to get treatment to speed things alon. But I know that isn't always an option.

But to reiterate - this isn't normal, you should not have to put up with this and the consultant is failing you by fobbing you off saying you need to go on the pill. It has a huge negative impacts on womens health and wellbeing. Sending you big hugs x

Do you want to say what treatment you have undertaken, also what age you are and whether you want any more children?

I did combined pill, then progesterone, then temporary chemical menopause for 6 months (GnRH analogues with add back HRT) then laser lap and dye so laparoscopy with laser to treat any remaining deposits, dye to check if my tubes were blocked as I was 27 and hadn't had any children at that point.

There are options open to you that could help you (coil possibly) and at this point where your life is like this I would suggest reading the Endo site I linked so you can be in control of your treatment plan. Endo will only get worse the longer you leave it untreated.

I follow an endo surgeon on Tiktok, women lose their kidneys to this disease and you can have thoracic endometriosis which can collapse your lung. From the Endo site "Whilst the majority of endometriosis is found within the pelvic cavity, up to 12% of those with endometriosis may have it elsewhere in the body, according to the BSGE/RCOG statement. This is most commonly within the chest cavity, including lungs and diaphragm, and is referred to as thoracic endometriosis."

I am not trying to scare you but urge you to get informed. I also ended up with stomach ulcers from taking NSAIDS to treat the pain, this was pre-diagnosis. It took 10 years for me to get a diagnosis from complaining I had painful periods to being believed that something was wrong. I am now 50 years old.

I have the same experience, just a week ago I went back to my GP and have returned to taking the contraceptive pill. It's expensive but the only one that didn't make me feel like I was having an outer body experience with anxiety etc it's called Zoely, I tried several before finding this one which I now take back to back, my periods last 3 weeks every month, the pain is crippling and I'm now iron deficient.

[Flowers] for all of the helpful advice. I’m sorry others are going through this. It is truly awful and is very disabling.

@BalloonsStreamers I had a brief look at the link you sent and need to put some time aside to go through it properly. I had no idea that endometriosis is serious. I’ve been in so much pain for many years but I’ve been continuously fobbed off and told all women have bad periods. So I believed it.

The only treatment I’ve had was a laparoscopic surgery to remove an ovarian cyst (this was many moons ago) and it was discovered that I have endometriosis. I was told it was mild but even back then I was suffering with this pain. I did get some relief after the surgery but within a year it had returned with a vengeance. I was then told to just see my GP about the pill as it’s only mild (it is most certainly not mild!).

DH and I would like a third child but I’m having second thoughts because I don’t know how I could manage 3 under 5 in this state.

I was in your position, 3 out of every 4-5 weeks was just pure pain. Even the strongest cocodamol or tramadol were only taking the edge off the pain.
I ended up with an Implanon and cerezette together to stop periods and lower my estrogen levels so that the endo is effectively stopped in its tracks. I had 3 laparoscopies before this to unstick various bits of my insides from each other and laser some of the endo pockets.
Now I'm pain free, period free and much happier!

You need to push for them to sort this out. i had endo (also discovered when I had the mother of all ovarian cysts) and I had one ovary and fallopian tube removed although i did ask them to remove both ovaries but they wouldnt. Anyway, i had the most horrendous painful periods and the gyne was just pushing me to have the coil which I didn't want. I kicked up such a stink they put me on Zoladex which basically kicks your body into the menopause but is reversible in case it doesn't solve the issue. i had six injections (once a month) to see if i would help which it did so after that they didn't give me a hysterectomy but they did remove my other ovary.

Doctors don't take things like this seriously enough. You need to go back, tell them its ruining your quality of life, is very debilitating and you need it sorting. Of course, if you do want another baby your choices are more limited but if you decide not to have any more children I really recommend you ask for Zoladex injections to see if it helps, which Im sure it would.

You need to go back to the gp. Firstly there are a lot of different pills on the market with varying hormone levels. I only use them for contraception, but tried 3 before the fourth one suited me with minimal side effects. I would try to explore all contraceptive options before looking at things like surgery as that can be difficult with young children.

Some options will also not be available to you if you would like more children, so maybe put some thought into where you are in your family journey so you can be clear about what suits you now and going forward.

Its not going to be a quick fix but you need to start on the journey so you can say you have tried this, tried that, etc and the problem can be escalated with referrals.